I’m off to New York City this morning, to spend the weekend with my sister! She and I have gotten closer in the last year, and we decided to try to have some real time together, in one of the best places on earth! We have so many memories of New York, having grown up in a Connecticut suburb right outside. It seemed like every Saturday our parents — huge culture mavens — took us in to a museum or something. (Snore! You can bet I will stay far away from museums today!) Then, when we were in high school, we began making trips with friends, on the train. We were not allowed to go into Central Park! So, being such a good girl, I did not, until I began dating Ned, (and I stopped being a good girl). Ned grew up in Manhattan. Then he showed me the wonders of love, and New York. (In fact, the three major cities in my life were discovered while I was first in love with Ned: Philadelphia, of course, where we went to school; New York; and then Boston, where he lived when we were 19. He worked at a video game company in Kendall Square, Cambridge, and I periodically took the train up, when I could get a weekend off from my hoity-toity waitressing job at Woodway Country Club in Stamford.)
Laura and I will probably walk from midtown to the Village, shopping and talking and eating the whole way. No Atkins for us today! Lattes and shoes. As a concession to my knee and hip, I am going to wear my more comfortable, but still stylish, boots and my new skinny jeans. I told Laura to dress hip but she said, “I don’t own anything hip!” (She lives in rural New Jersey and is the polar opposite of me fashionwise.) Maybe I’ll get her to buy something in NY but she is pretty frugal. I’m also hoping to stop in at Bliss Spa for some kind of amazing treatment (they actually have something called the “hair-do,” which is a hair massage!).
I found a great Moroccan restaurant with a bellydance show; she’s never seen one, other than mine! And I, of course, cannot wait!
My agent, who is a truly wonderful person, sent me this story. We don’t know its author or its origins, but we both loved its sentiments. A bit on the corny side, but who really cares? I edited out the worst of the corn, at the end, where you are implored to pray and to send it on to four people. Consider the latter done right here and now! The praying I leave to you.
GOD LIVES UNDER THE BED
I envy Kevin. My brother Kevin thinks God lives under his bed. At least that’s what I heard him say one night.
He was praying out loud in his dark bedroom, and I stopped to listen, “Are you there, God?” he said. “Where are you? Oh, I see. Under the bed…”
I giggled softly and tiptoed off to my own room. Kevin’s unique perspectives are often a source of amusement. But that night something else lingered long after the humor. I realized for the first time the very different world Kevin lives in.
He was born 30 years ago, mentally disabled as a result of difficulties during labor. Apart from his size (he’s 6-foot-2), there are few ways in which he is an adult.
He reasons and communicates with the capabilities of a 7-year-old, and he always will. He will probably always believe that God lives under his bed, that Santa Claus is the one who fills the space under our tree every Christmas and that airplanes stay up in the sky because angels carry them.
I remember wondering if Kevin realizes he is different. Is he ever dissatisfied with his monotonous life?
Up before dawn each day, off to work at a workshop for the disabled, home to walk our cocker spaniel, return to eat his favorite macaroni-and-cheese for dinner, and later to bed.
The only variation in the entire scheme is laundry, when he hovers excitedly over the washing machine like a mother with her newborn child.
He does not seem dissatisfied.
He lopes out to the bus every morning at 7:05, eager for a day of simple work.
He wrings his hands excitedly while the water boils on the stove before dinner, and he stays up late twice a week to gather our dirty laundry for his next day’s laundry chores.
And Saturdays-oh, the bliss of Saturdays! That’s the day my Dad takes Kevin to the airport to have a soft drink, watch the planes land, and speculate loudly on the destination of each passenger inside. “That one’s goin’ to Chi-car-go!” Kevin shouts as he claps his hands.
His anticipation is so great he can hardly sleep on Friday nights.
And so goes his world of daily rituals and weekend field trips.
He doesn’t know what it means to be discontent.
His life is simple.
He will never know the entanglements of wealth of power, and he does not care what brand of clothing he wears or what kind of food he eats. His needs have always been met, and he never worries that one day they may not be.
His hands are diligent. Kevin is never so happy as when he is working. When he unloads the dishwasher or vacuums the carpet, his heart is completely in it.
He does not shrink from a job when it is begun, and he does not leave a job until it is finished. But when his tasks are done, Kevin knows how to relax.
He is not obsessed with his work or the work of others. His heart is pure.
He still believes everyone tells the truth, promises must be kept, and when you are wrong, you apologize instead of argue.
Free from pride and unconcerned with appearances, Kevin is not afraid to cry when he is hurt, angry or sorry. He is always transparent, always sincere. And he trusts God.
Not confined by intellectual reasoning, when he comes to Christ, he comes as a child. Kevin seems to know God – to really be friends with Him in a way that is difficult for an “educated” person to grasp. God seems like his closest companion.
In my moments of doubt and frustrations with my Christianity I envy the security Kevin has in his simple faith.
It is then that I am most willing to admit that he has some divine knowledge that rises above my mortal questions
It is then I realize that perhaps he is not the one with the handicap . I am. My obligations, my fear, my pride, my circumstances – they all become disabilities when I do not trust them to God’s care
Who knows if Kevin comprehends things I can never learn? After all, he has spent his whole life in that kind of innocence, praying after dark and soaking up the goodness and love of God.
And one day, when the mysteries of heaven are opened, and we are all amazed at how close God really is to our hearts, I’ll realize that God heard the simple prayers of a boy who believed that God lived under his bed.
Kevin won’t be surprised at all!
All during vacation week (last week) and up until last night, we had our first pet. We were taking care of our neighbor Isabel’s tadpole while she went away on vacation. The au pair, Isabel, and her little sister Bis brought over the guy in a fishtank-like box, decorated inside with plastic plants, fake gray rocks, a little cave, and a frog’s life tableau on the surrounding walls. There was also an empty soup can and an eyedropper. Little Bis informed me that this was to suck up his poo every so often from the bottom of the tank. Isabel showed me how much of a pellet to scrape off daily as his food. And that was that.
They didn’t tell me his name; they said he had many nicknames. So I felt free to name him myself. Ned and I quickly agreed on “Thadeus J. Pole.” Why the J? We did not know.
I was excited about the pet-for-a-week thing because I figured the boys would be into it. They were not. I showed each one of them the cute little things Thadeus did, like if you poked inside the cave with the eyedropper, he would come jumping out. Or sometimes he would hide behind some of the fake grass and the only way I would find him was by suddenly turning on the light.
I had had little pets growing up. Every pet Laura had, I had, too. Her little turtle named Fivvy, for her fifth birthday (Five-y), and my little one named Yokky (my mom called me Suki yaki). When they died, we got others. Eventually we got gerbils instead. Mine were Queen Victoria and Prince Albert. Laura’s were Crackle and Crunch.
Gerbils; what can you say? They eat their young. That was the most impressive thing about them. They seemed to have their babies on every holiday and then we would watch in horror and delighted disgust as they ingested the weakest ones.
I had a kitten just before Nat was born. She was high-strung and tried to bite baby Nat in the head. We had to get rid of her.
So I was eager to see how I’d do with a tadpole. During the week he lost his tail and grew fat! My neighbor could not believe the change when she got back! As I handed over the sloshing tank with a mixture of pride and grief, I realized that I really wanted a pet of my own.
A cat? No, by now I am allergic. A dog? Too much like a real person, too much responsibility? A tadpole? Too boring, I must confess. A turtle? They carry Salmonella. A gerbil? What?! Are you nuts? And expose Ben to that kind of violence? I don’t want to give him ideas! And Max would be saddened beyond repair by the whole baby-eating thing.
Then, when I was taking out the trash two days ago, I looked up and saw a big fat brown rabbit, five feet away by the shed door. He just sat there boldly chewing. He knew he didn’t have to be afraid of me! So adorable, so innocent, and yet somehow wild and tough! And it came to me: A rabbit for a pet!
I ran in to tell Ned. He agreed right away. So now we are researching it and deciding. A rabbit seems perfect: they can be litter-trained, they stay in a cage except a little bit of running around, and they don’t want a lot of handling (which is good because the boys would probably ignore him for the most part, and if he were a dog, he would be bereft).
The biggest question is: where would he run around and how do we keep him from chewing all of our electrical cords?
It’s bad that…
I had to clean up a dead mouse yesterday
But it’s good that…
It was outside and not inside.
It’s bad that…
Nat had a terrible, painful meltdown Tuesday night
But it’s good that…
He was extremely verbal about all the things that were bothering him and he went to bed early.
It’s bad that…
I only just discovered bellydance in my 40′s rather than as a young woman — I’ll probably never become a professional dancer
It’s good that…
I am getting better and better at it and Ned likes me buying beautiful costumes and dancing for him.
It’s bad that…
Our best toilet is out of commission until tomorrow
It’s good that…
We finally replaced the old drain in the ground.
It’s bad that…
It cost $5700
It’s good that…
We never have to worry about sewage again.
It’s bad that…
I will never again know what young new love feels like
It’s good that…
I know what strong old love, the real thing, feels like
It’s bad that…
I have not yet heard from my editor, who has had the proposal for weeks!
It’s good that…
She just emailed to say she will be back to me in one week.
It’s bad that…
I won’t be having any more babies
It’s good that…
My boys are handsome, strong, healthy, (knock wood), and kind
It’s bad that…
it is raining again
It’s good that…
Everything is greener than ever.
This message is for any of my Massachusetts readers. Please act to expand the Division of Autism in our state. If you are not in Massachusetts, feel free to take this text and push your own Legislature to designate a Division of Autism, separate from the Department of Mental Retardation, for better services for people with autism, if there is not one already. If you read my blog because of autism, you should be very familiar with your state reps and state senators by now, and they should roll their eyes when they hear it is you on the phone. Being this kind of pain in the ass is the only way to keep autism services on the front burner.
URGENT AFAM (Advocates for Autism Massachusetts) ALERT
CALL YOUR STATE REPRESENTATIVE TODAY
Ask your Representative to support House Budget Amendment #1159
To increase funding for the Division of Autism
The House of Representatives is voting on the State Budget for next year. The budget currently proposes level funding for the Division of Autism, despite the fact that the number of children diagnosed with an Autism Spectrum Disorder (“ASD”) continues to climb at an alarming rate.
Rep. Barbara L’Italien filed House Budget Amendment #1159 to increase funding for the Division of Autism to $5 million. It is crucial for the Division of Autism to receive additional funding in order to address the needs of families of children with ASD.
Additional funding for the Division of Autism will:
? Help newly diagnosed families access resources and available treatment
? Provide behavioral, social and communication services and programs necessary to support children with autism ages 0-18 in the community
? Expand the Autism and Law Enforcement Education Coalition (“ALEC”) program statewide to provide more training for police, firefighters, EMTs and other public safety officials to help them recognize the signs of autism and effectively respond in emergency situations
? Offer job-training programs and independent living skill classes for teen-agers with autism
If you believe the Division of Autism needs more funding to better serve children with ASD, here is what you can do:
IMMEDIATELY call your state representative at 617-722-2000 and say you support House Budget Amendment #1159 which increases funding for the Division of Autism to $5 million. If you are not sure who your representative is, call your city hall or visit www.wheredoIvotema.com)
Let your Representative know how important this funding is for your family.
ÿ Provide examples of services and programs your child has received after-school, weekends, school vacations and the importance of these services.
ÿ Equally important, give examples of services your child needs but has been unable to obtain and the harmful impact.
If you have time to make additional calls, please call Rep. Robert DeLeo, Chair of House Ways and Means (617-722-2990), and Speaker of the House Salvatore DiMasi (617-722-2500) in support of House Budget Amendment # 1159.
For further information, contact Ann Guay at 781-891-6270 x102 or guay@AFAMaction.org
Sponsored by: Advocates for Autism Massachusetts (AFAM), Doug Flutie Jr. Foundation for Autism, Asperger’s Association of New England, Autism Alliance of MetroWest, Inc., Autism Resource Center of Central Massachusetts, Autism Society of America, Massachusetts Chapter, Autism Support Center, Till/Boston Families for Autism, Inc., Community Autism Resources, Inc, Community Resources for People with Autism, Family Autism Center, The ARC of Massachusetts, Autism Speaks and Massachusetts Advocates for Children
A day that has been up and down. As beautiful and warm as yesterday, I took another long run outside by the reservoir. Yesterday I did 4 miles, just like that! Today, a little more achey, so 3. As long as I have that iPod, I can go forever.
But when I got home, Nat was all a-jitter. He was acting really slippery, you could not pin him down, or hold him. He just could not be calm. He was repeating everything we said obsessively, biting his arm, yelling, running all around. At one point he asked to hug me, so I did, but he became aggressive. I could tell it was not personal, it was a self-regulation thing. I kept my voice neutral and soothing, but eventually I lost it, because while he was flailing about, he swiped my eye. I ran upstairs crying, yelling, “Why does everything have to be so hard?” Oh, great job parenting, Sue!
Ned got him calm and they both came upstairs and sat with me while I got calm, too. Then I went out for a coffee and when I came back, all was well again. We all got in the car and drove into Cambridge, to Mem Drive, to watch a movie being filmed. The Charles was beautiful, there were hardly any people, and everyone was enjoying the fresh air and yellow sunshine.
Then we got home and had lunch, and I headed off to the Anime Convention downtown with M and B again (we also went on Friday). Ben had made a Red Nocturne, a character from the video game Kingdom Hearts, and he hoped people would notice, which of course they did not because the Convention attendees were mostly teens and twenty-somethings bedecked head to foot in anime cossies (pink hair, pink platform shoes, pink mini hoopskirts, etc.) and so they were not about to notice a little boy with a paper sword-like thing in his hand. I told him I saw people looking, though, and maybe I did.
Tired now, Ned and Nat just got back from swimming, so it’s time for a Ned Nap. Yay!
Here is my column from this week’s Brookline Tab.
Learning From Field Trips
“Edge of Town”
They say we learn from our mistakes. But do I? Let’s look at my history with Brookline Public School field trips just for the sake of good examples. I have been dealing with field trips for about ten years now; having two children in the schools makes that about 20 years; add to that my School Committee experience with approving field trips for five years, and you could say that I have been encountering field trips for much of my life.
I believe I don’t like field trips.
You see, all I seem to retain from past trips are their annoying aspects: the surprising, panicky discovery of the permission slip, weeks old, scrunched at the bottom of the backpack; the search for just the right amount of money; the question of whether I can go; the dread of bad weather on the day of the trip; the preparation of the 100% discardable lunch; the calculations of work hours lost to travel time; and the trip itself, usually crammed onto the T with all those kids and all those unsuspecting commuters.
Year after year, my son Max would bring home those permission slips, announcing the trips to the Gardener Museum, the MFA, the Science Museum, the Swan Boats, and George’s Island, with other invitations in between, to Berklee College performances, plays, Hammond Pond, Wolf Hollow, or even Fenway Park. Each time, I would imagine the hassle of squeezing onto the bus or train with all those kids, having to keep track of someone else’s child along with my own, the endless walking in the wrong shoes, the shivering on the ferry because of course it rained, and I would think, “NO! I don’t want to go! Why can’t they just stay in school?!”
And most of the time, I would nevertheless check off, “Yes, I will be a chaperone,” and not listen to that screechy, whiny inner voice. Why? Because there was another voice that would break through my self-pitying, lazy fog: Max’s. Every year and for every field trip, I could count on Max asking my husband or me if we were going to go, his wide blue eyes reflecting only that, the desire for one of us to shepherd him around.
Then came sixth grade, and a door slid shut, as surely and suddenly as the departing T trains at Park Street. There were field trips, but parents were no longer asked to go along. This was middle school now, and even though they were still part of Lincoln School, everything had changed. Along with Max’s new towering height was a soft but certain distance between us that made me stop – while he kept going.
Ben, my youngest, still has many years of field trips to go. Six years younger than Max, and as different from him as night and day, he has been making his way through Lincoln School with many of the same teachers, the same curriculum, and yes, the same field trips. The kindergarten apple-picking trip, where they map their first graphs of what kind of apples they liked best. The first grade Gardener Museum unit, where many of the kids are exposed to fine art and Medieval artifacts for the first time; the second grade George’s Island trip at the end of the year, where they get a feel for Civil War buildings and where they imagine they have discovered secret passages and ghost women.
Last week I (grudgingly) went along with all three third grades to the Harvard Museum of Natural History. There were more than sixty kids, plus teachers and aides, plus one third of the parents. We snaked down Route 9 in the clammy cold, and waited for a train that wasn’t too crowded. We stood until Park Street (well, I managed to sit for a little while), and changed trains for Harvard. But everything delighted those kids. Even the carnival-colored tiles of the station were cause for excitement. The crowded train with its sliding doors and electronic tones reminded my son of a favorite video game.
We charged through that museum, taking in musty dioramas and fossil displays. We touched a frog and a snake. We gobbled our lunch at 11 a.m. Exhausted, we clamored back, from train to train, to the school. My feet were killing me from wearing the wrong shoes. My back hurt. I wanted a nap. But I kept remembering how my reticent Ben had raised his hand proudly during the Jaws and Claws demonstration. And how he – macho little third grader that he is – had let me take his hand when we crossed the street. And that it was sticky and warm.
The door is still open. Thank goodness for field trips.
How do we make sense of the tragedy in Virginia? I don’t know. Like Columbine and all the shootings that have occurred, in Boston and elsewhere recently, there is no sense to it. People look for a reason, such as “gang vendetta,” “desperation,” “miserable childhood,” or “mental illness,” but nothing will satisfy. Maybe it helps a little to understand they why’s of a tragedy. Perhaps it does, simply because it allows people the chance to talk about it, and I am a believer in talking. I think that forming the words in your mind and then in your mouth, getting them out into the air, makes them and their content a tangible thing, almost, and allows you to look at it. I know that I have the voracious need to talk about everything that I think about, to write it down or to talk about it to Ned or a friend, or to myself while driving. I have to say the words and hear them in order to fully digest them.
This is why I think therapy is a truly wonderful thing. Therapy really helps. Maybe not right away. But it helps you get a full understanding of your behaviors and thought processes, because you hear yourself reflected by your therapist. People judge themselves for being in therapy as being self-indulgent, ridiculous, etc. They hate the fact that they are spending money on talking to another human being. And for not even a full hour; a 50-minute hour! How insulting. How degrading.
But actually, therapy is one of the most life-affirming acts a person can make. Understanding ourselves and working to become better people helps make the world a better place. Looking within at all the alleged ugliness and coming to terms with it, that is a beautiful, strengthening thing. Oh sure, you’re thinking, if you’ve got the cash and the time. Well, I don’t know but most people can find 50 minutes at some point during the week, or every two weeks. And as for money — well I can’t help you there, but I do know that there are sliding scales and that many things are possible if we set our minds to doing them. I don’t mean to be dismissive; I know that I am fortunate that my healthcare covers therapy. Many people’s insurance covers therapy and yet they still do not go. But why? Why are matters of the head deemed less important than, say, if you had a lung or heart problem?
I wonder why it was that the Virginia shooter’s family claimed that although Cho was diagnosed with autism at age 8, they did not get him help because they “couldn’t afford it.” Surely some kind of autism “therapies” would be made available through the school system, if indeed the child had a bona fide autism diagnosis. But the fact that according to CNN, the great-aunt called Cho an “idiot,” when referring to the tragedy he caused, and the fact that FOX News claims another relative said he was “glad Cho was dead,” makes me think that there was more going on in that family than lack of financial resources. It sounds to me like lack of understanding and hatred were going on, regardless of Cho’s diagnosis.
Of course tragedies and anomalies occur. But it seems to me that a struggling family, wrestling with finances as well as two very different cultures, an abhorrence for aberration, and a very needy child, is a recipe for disaster. Certainly not a disaster of this magnitude, but real trouble nonetheless.
One thing I feel pretty certain about: therapy, whether for communication purposes or for emotional work, would probably have helped this young man. The right help would have averted this disaster.
And another thing: it was not, definitely not, autism that led to this horror. Autism does not make people killers. Sorry, FOX, CNN, et al. Do your homework. It is the lack of supports and proper healthcare that turn people out into the streets before they are truly ready to be there.
Here, so far, are my Autism Works thoughts. This is what I believe is needed thus far, as the mother of a child not yet in the workplace but with less than 5 years to go under the IDEA.
1) A blueprint for parents: What to do and When to do it. A timeline of action items like guardianship, trusts, SSI, meeting with appropriate agencies, finding a vendor, finding DayHab, when and how to talk to potential employers, what job training should be on the IEP starting when. Should be made available on line and at various obvious places.
2) An amendment to the Americans with Disabilities Act: an extension of the IDEA entitlements into adulthood for the purpose of increasing employment of DD adults. Anyone with an IEP who stays in school up until 22 has the option of obtaining a job coach, job training, travel training, and other supports necessary for working. The federal government should make the following the law and appropriate funding necessary immediately:
A. Employers should be encouraged (i.e., compensated) for taking workshops on adapting the workplace for the developmentally disabled.
B. Colleges and universities ought to offer credits to students going into the fields of therapy, psychology, medicine, education, and any other course of study relevant, who work during a semester as a one-on-one with a DD adult as a Personal Care Attendant or Job Coach.
C. High schools should all consider offering Best Buddies programs and community service credits to students who buddy up with DD peers.
I spent some time yesterday working on Nat’s future. No, I did not get out my old Tarot cards; I talked to people and did a lot of thinking. I realized one big thing: Nat’s adulthood is going to feel a bit like his early childhood, where there is no one clear path. What we have is a morass of trails in a very large forest. There are half-hidden footpaths that suddenly end; there are some that go a bit longer but we don’t know where the end up. There are guides who come and go, and some know more than others. The only thing that is clear to me is that once again Ned and I are Nat’s main bushwackers here and so we will have to put together our own route for him.
Now that I know this I am not scared. Not scared; angry and energized. I am so very furious that things are in such bad shape for DD/Spectrum adults. I am going to do what I can to kick the sleeping giant of the government, starting with finding out whether I can join Autism Speaks — Yes, that is what I said, Autism Speaks — and get them to 1) get some DD and autism spectrum adults on their board and into their subcommittees and 2) get them to use some of that huge muscle towards autistic adults. If I can’t, I am going to start Autism Works (get it?), with both autistic advisors and people like this guy, who I met at a conference where we were both keynotes (if I can get him). I’m serious. All of you who wrote me can help. I just pray that I don’t lose my drive to the gray maw of depression — but we all know that happens.
In terms of my Natty boy, there are no right or wrong answers here, just like his education. There are only better or worse supports and plans. We have to keep our knowledge of Nat fully wrapped around us, our eyes straight ahead on our vision, while opening up our minds to relevant suggestions. Readers, please excuse all of the histrionic extended metaphors here, I am a manic mother trying to figure out how to make the world work for my son.
I made some calls to people I know affiliated with our library so that I could find out whether any moderate to severely disabled people work there. I learned about the volunteer program there, where high schoolers do various (consistent) tasks to do with sorting books that come in. It seems like Nat could begin there, but he would need a job coach to help, at least to start him off, and a really openminded supervisor. I hope that my town, which is known in these here parts as an extremely liberal, progressive, crunchy, etc., outpost (similar to the People’s Republic of Cambridge, but more reasonable), will be able to rise to Nat’s needs. It is going to take a lot of liaisoning on my part, and perhaps some very convincing columns in the local paper about what we do well here and what needs improvement. I may have to do some shaming, but hopefully not.
It is going to take a tag team approach, Ned and me, just like always, where I get the idea, I make the initial contacts and forge the way, and he picks up when I start to flag.
So first I am going to get volunteering at the library written into his IEP, which is May 1. I am going to visit the library and observe the program and determine what his needs will be to adapt that workplace. Maybe some of my team should come with me.
And that is how we will start building Nat’s skills and resume. With little bridges and little steps and hopefully as few trip-ups and dead ends as possible. My boy is going to work and contribute and feel the satisfaction of a job well done — I know how much he loves that already. And our library will have a dedicated worker like they’ve never seen before. Cute, too!
My brain is full of Nat’s future today. I think I am either going to have to write something huge about employment and independent living, or start a new organization (with my mother, who really wants to help) that will go and lobby Washington for new entitlements for adults with autism. Maybe I’m in a manic phase or maybe I’m just feeling the return of my old energy and focus and drive but — I feel I’ve got to do something NOW for Natty and those like him.
It is no secret that I am a champion of Late Intervention for those who are developmentally delayed. These days I absolutely abhor the mentality that pushes Early Intervention as a means of de-auticizing people (thanks to my dear friend NancyBea for that brilliant term). I am not opposed in the slightest to Early Intervention, mind you; I am talking about using it in the belief that a child will not need anything later on. That particular educational philosophy has some politics to it; I believe it is a way to justify funding for early childhood education (which is great) but by taking away from what older DD folks may need (which is terrible). What we need instead is more funding and programs all around for those on the autism spectrum, which have a bent towards improving any and all skills. If those programs result in more people in the mainstream classrooms, then great! But that should not be the only acceptable end result. Some people will never be in a mainstream classroom, and that is fine. They should still continue to have all the same supports, into adulthood.
Why doesn’t the funding continue? Who says that the needs stop at age 22? Why is education an entitlement but employment and independent living are not? I believe that we need to flip the goal of education around for some people and backload services — give them more as they get older, to be sure they will be able to do as much as possible with their lives as adults. When I think of what the little kids get, (10 hours home-based therapy in some situations, focus on play skills, toilet training, eating at the table) I just can’t understand why a person like Nat can’t get travel training, home-alone skills, phone use skills, street safety? If he were to get that training NOW for the next 5 years he would really have a shot at independence!!!!!! According to the Autism Society of America, only around 6% of people with autism (I’m assuming they mean moderate to severe, as opposed to HF or Aspie, but maybe I’m wrong?) work!!!! Excuse my language but that totally SUCKS. That is WRONG.
This is not a clever post it is a stream-of-consciousness post, which is the first stage of getting it out of me and getting myself into action. Stay tuned…
I am certainly not referring to the weather. I have forgotten what the sun looks like. But I am floating along because yesterday was simply golden.
Ned and I woke up early to bring Nat to his Special Olympics swim qualifier at Babson College in Wellesley. We decided to leave Ben and Max home because they did not want to go. We don’t want to make them attend these things but naturally I struggled with the question of whether to gently force the issue. Nat is so often the third wheel with the two of them. Although I regularly prompt them all to talk to one another, it does not come easy for any of them. I do find myself wondering whether I failed in some regard over the years in terms of getting Max and Ben to pay more positive attention to Nat — perhaps — but the bottom line is, they all three have their issues when it comes to socializing and certainly Max and Ben are wary around Nat because he is unpredictable and has in the past been aggressive. I can’t very well urge them to stay in his face if it might annoy him enough to lunge at them. But still, it bothers me that they don’t even just naturally greet him when he comes home from school without my reminder.
In the end we decided that the swim qualifiers are too indeterminate in length for them to enjoy, too unfamiliar a location, but that we would all go to the State Games in June instead. I was glad about this decision because it turned out that one of Ben’s best friends called for a playdate while we were gone and Max arranged for him to come over while he babysat.
Nat was in a great mood. While we waited for the races to begin, we sat around on chairs with the other families and listened to blaring rock music. Nat had a grin on his face the entire time, which I had not seen in a while. He seemed utterly content. We just knew he was happy and that he would do well.
And so he did. Except for being the last to get in the water, which was very cold. Nat sat on the side of the pool while his coach urged him to get in, get in. I yelled, “Get in, Nat!” so loudly and everyone laughed. Soon the whole crowd was clapping for Nat to get in. Finally he went in and was clearly extremely cold; his arms were lifted up like bat wings over the frigid water. But when that horn sounded, he jumped forward and kept an amazing lead for the whole race. Ned took tons of great pictures. I screamed myself hoarse. Neigh. Yay.
Nat won gold medals in all three of his events, with a happy face the entire day. So beautiful. I only wish that Max and Ben could have seen him because maybe it would have made the slightest difference in how they feel about him? But who knows? So I called Max from the pool and told him about Nat’s wins. “Cool,” he said, sounding sincere. We took Nat out for a Starbucks treat on our way home. Nat enjoyed his M&M; cookie while Ned and I had decafs (mine was a breve misto, of course).
Always the enterprising young man, my Max has designed a tee-shirt! It is based on the Mooninite “bomb scare” that occurred in Boston a few months ago, where the folks who were marketing Aqua Teen Hunger Force placed little lit-up Mooninite cartoons on boards and hid them all over the city as an advertising ploy, only to get their asses royally kicked by the City of Boston for causing a panic, at least among the uninformed powers that be. I think it was irresponsible of the Aqua Teen Hunger Force people, and they have certainly had to pay for their mistake, but Max disagreed with the uproar it all caused. To him, this was a sign of how stupid adults are. I am intrigued by his growing skepticism about the world and I truly enjoy his sense of humor, which is why I am linking to him here. The line on the tee-shirt is “Somebody Set Up Us the Bomb,” illustrated with the Mooninite figure, refers to a bad Japanese translation of a cheezy video game, “Zero Wing.”
Ned and I went out with friends to an old favorite the other night, L’Espalier. Because these were people I did not know very well, but whom I really wanted to know, I found that it was one of those situations where all around me were interesting conversations. I kept wanting to continue with one but then to turn and get in on another. To make matters more challenging, this is one of those kind of restaurants where there seem to be like four waiters for every table, plus the maitre d, and every time food is decided upon there is huge conversation about that. Just as every time food is brought, the waiter must interrupt your conversation to announce what it is and how it is cooked and what is interesting about it (“espresso essence?”) Not only that, they also brought over food that the chef wanted us to try. An all around experience, but being a real talker/listener, I did not need to have the waiters be so much a part of it!!
Ned and I went out to dinner with friends the other night, to a lovely restaurant in Boston (L’Espalier). Gorgeous food, sumptuous surroundings, and a lot of laughs. … See my Tabblo>
I drunk myself blind to the sound of old T-Rex
–The Who, Face Dances, and no, I didn’t. But I did think a lot about old T Rex today.
Today I took a field trip with the entire third grade, to the Harvard Museum of Natural History, in conjunction with their “Jaws and Claws” science unit! We took the T there, (MBTA to you non-Bostonians) which involved changing trains at Park Street in downtown Boston. Imagine 60 third graders, one-third of them with parents, (both Ned and I went!) and all the teachers and aides. Well, I have to say there were a lot of surprised commuters.
I am exhausted but not able to nap, which I think is a good thing. It means my mind is feeling too alive to shut down and I think that bodes well for the depression situation. I knew I’d be tired out but I made myself go because 1) Beastie really wanted me to and 2) Probably in another year or two he will not anymore. It all changed so fast with Max, and he was such an outwardly loving boy! It makes me ill to imagine preadolescence with Little Beast. Oy vey’s mir.
This was the cutest museum! All kinds of old-fashioned diorama kind of exhibits! Smelled just a little bit like a grandmother’s house, or an old sweater. Just like when I was a kid and we went to all the New York museums, like every weekend, it seemed. I even began to feel ‘museumy’ i.e., nudgy, like “Oh, I am so done with this place!”
But we stayed a while longer and I got a second wind. We really had a chance to check out the critters and attend a little show on predators. The museum guy had animals to pass around, and I got to handle a huge frog, who puffed himself way up as a defense. So cute and valiant! So poignant, that he would think this would work to ward off someone as big as me! But good for him, to try! To do the right thing, even in the face of utter, certain failure. Very existentialist frog.
We also patted a corn snake (harmless) whose moves reminded me of belly dancers (the good ones). I was so proud of Little B, who raised his hand a lot and told a story about how he saw a picture of a boa constrictor swallowing a deer.
It was lovely, just lovely, spending time next to Ben like that, looking at his sweet excited face: “Ew! Baleen!” Brushing his long, messy hair (which smells like pencils) from his forehead: “Mom! Not in public!” And then he grabs my hand when he crosses the street. So cute and valiant! His small pale hand is always warm and a little sticky. I could weep over his hand.
Looking at the dinosaurs made me think about the new discovery, that conclusively links dinosaurs to chickens. Proof that God has a sense of humor! How the mighty are fallen. Of all the creatures great and small in this vast world of ours to be related to; the chicken? I’m sure the TRexs are rolling over in their fossils about this one. Why not the lion? Or the elephant? Or at least a really big bird, like Big Bird, or the ostrich! But a chicken? Is there anything more benign or innocent than a freshly-hatched chick? And yet! They are related to the most ferocious creatures that ever walked the earth. But seriously, will this mean that you’ll be able to get Kosher dinosaur meat now, too? And — most importantly, will it taste like chicken?
Here, by the grace of God and an inside straight, we have a personality untouched by the psychotic taboos of our tribe — and you want to turn him into a carbon copy of every fourth-rate conformist in this frightened land!
–Robert Heinlein, 1961
Oy, go and have children.
–My Great-Grandmother, “Bubbe,” Sarel Wolfson
Little B is on his playdate with A!! I have been nervous for the last hour, just hoping it works out. I know I should relax, and get a life. I just want him to have a friend or two, I don’t want him to have a hard life, to be lonely or sad. I just hate it when he asks me to get him a playdate and I just know the preferred child is going to be unavailable. But as I’ve said, it will do no good to force B to be in PALS (the singing/acting group at our school that sucks up all the little kids on Mondays and Thursdays until they are old enough to chafe under the strictness of the hours and the director). It is no use suggesting T-ball or soccer or anything remotely resembling a sport. But it is my job to make sure he has enough social skills to get through life okay, and since he cares about having friends, I use that as my way in.
I coached him a little about the upcoming playdate with A yesterday: “Now Beastie, you know that when you’re with A, you should probably try not to joke about anything that’s about him; that doesn’t go over too well with him, right? He’s kind of sensitive.”
“Right.” In a robotic voice. He goes back to his pad. “Hey, Ma, you know I think the lava guy should have crystal shards in him. I think they all should.”
WTF?? “Yeah, probably.”
It is so hard to know what is on his mind, because he hates to talk about feelings. He hates to talk about anything that he did not think to talk about. Simple conversation, with a give-and-take, is just not his cup of tea. He is not comfortable in the realm of emotion, either, except anger and happiness. His therapist has helped him with this considerably, however, and I think that development will take care of some of it, too.
Natural development is totally underrated these days. Everyone wants to get in there and force progress out of their kids, ASD or NT. They have to learn tennis before first grade, so they don’t pick up any bad habits. They have to do piano by age six, or it’s too late. Math facts memorized by age eight. And don’t forget Early Intervention and the Marvels of the Elasto-Brain of the Five and Under Child! Therapy, therapy, and more therapy! Toilet train by two. 80 hours of ABA a week when they’re 9 months old, that will make ‘em snap out of it! Uh, Oh, we only did 79 hours with Nat! Oh, that’s why!
(Okay, okay, I’m just joking!!! Sorry!!!)
Some of my critics call me old-fashioned because I champion acceptance of our kids’ quirks (Hello, Making Peace With Autism) rather than forcing them into the narrow round holes of Mainstream USA. But listen, I really do understand the impulse to push, push, push! I, too, tried a bunch of things with Natty when he and I were younger, (dietary change; Floortime; we had him tested for Celiac’s disease and gluten/casein intolerance; we were on a waiting list for that pig hormone everyone went ga-ga over in the 90′s, but then Nat was determined not a good case for it. (I don’t know why, I think because he has never shown any G.I. problems, he’s as regular as a clock); sensory integration; and of course, ABA ad nauseum.)and mark my words, the trends come and go. Sometimes I get close to trying one thing or another but then I start to get skeptical again and to feel like it all sounds like it could be anything that causes the positive changes cited. This is what happened to us over the years with all the well-vaunted approaches we tried.
But most parents get a feel for what works for their kid over time, and it can be any of the above or more that works. It could also be a better attitude on the part of the parents and teachers that help the child do better!
And guess what worked best for Nat? Getting him into sports! How’s that for irony? I always say, “At least I have ONE NORMAL BOY!”
Progress is what you decide it should be. I think Nat is whizzing ahead in lightyears these days. Yesterday I was scolding Ben for wearing the same pants for two weeks (yes, that is what I said), and he protested my demand that he change. Nat whips around and looks at Ben’s annoyed face, and a big grin appears on Nat’s face. He starts rocking and smiling and then laughing a little. I said, “Natty, are you laughing at Ben?”
The smile got even broader. Oh my God! Ned and I looked at each other. Whoa, Nat! It was definitely a case of Nat being a nasty older brother, glad to see his sibling (with whom he has a difficult relationship) a little unhappy. Thank goodness Ben didn’t see! I guess that is progress, too, that they didn’t end up fighting. He just sighed and went upstairs and changed his pants.
Mean Nat! Resigned Benji! Now I’ve seen everything! But to me, here in Bizarro Land, that is real progress.
While cleaning up the breakfast dishes, I heard Max and Ben shrieking with laughter. I asked them what was so funny, and they showed me. We have nothing against cats, Katz, or catz, mind you! But somehow, they provide excellent humor fodder. See what you think.
When Max was Ben’s age, I had the same worries, about who would be his friends. This was not because of anything intrinsically wrong with Max’s personality; it was because Max did very few of the typical afterschool activities. We pretty much pleaded with/forced him to play soccer for several years, and he was so blase about it that he became the only kid who would walk across the field towards the ball.
As boys get to be ‘tweens and then teens, it appears to me that most of them veer off into sports of some kind. If not a formal team, they seem to want to be moving quickly, outside, with some kind of ball. I remember watching as, one by one, Max’s friends became less and less available to him. It broke my heart for him and it also angered me, that everyone seemed so unoriginal, that sports was the only thing they seemed to want to do and it was the main thing parents encouraged them to do. Parents did not encourage them to work on their art, or anything else.
The same thing is happening with Ben’s friends now. More and more of them want to play sports. It is very difficult finding him a playdate, and I worry about him finding friends. But maybe it will be the same for him as it was for Max: eventually they find kids whom maybe they didn’t notice before. Kids who seem a bit quirky, or geeky. Max found a boy who was into Flash animation, and that started him on his whole technology hobby. Max eventually identified with this kind of kid, the nerd. Now he has a very nice group of boys he is friends with at the high school, who are into Star Wars, computers, the Matrix movies, and Manga.
That might be in the cards for Ben, too. I look around and notice the boys who don’t do sports, who often go home with their moms instead of riding with their scooters or bikes with the other kids. There is one in particular whom I think is a real sweetheart, but for the longest time he has not wanted to play with Ben because in the fall Ben punched him. Yes, punched him. It was terrible. Ben had become really frustrated with this boy, who was kidding around and kind of teasing him, and before he knew it, he punched him in the stomach. This boy has been really unnerved about the idea of playing with Ben since then, although they often do team up in school projects. I have been talking with the parents about what to do, but they don’t want to insist. I can’t blame them, but I really feel for my little B. He made a bad mistake, but he is so sorry about it by now.
Anyway, B told me today that this boy said he wanted to play tomorrow! I was so happy I nearly cried right there, but of course I didn’t. I felt so proud of Ben, working hard to resolve things. Social life does not always come easily to him, that’s for sure: he is very strong-willed, impulsive, oversensitive, and can sometimes be mean. But he is also brilliantly creative, funny, and talented. It’s a good thing his positives are so strong.
Sometimes I think: If Ben could only survive childhood; and If Nat could only survive adulthood. And If Max can survive all of us.